MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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GraemeL's picture
Replies 21
Last reply 9/3/2012 - 8:00am
Replies by: GraemeL, Ashykay, LynnLuc, JerryfromFauq, lhaley, NYKaren, Anonymous


My wife Susan was diagnosed with Stage 3 melanoma in July 2011 and had the lymph nodes in her left groin removed.  Subsequent scans were clear and BRAF negative, so she had interferon which almost killed her.  Two weeks ago on August 13 Susan had a CT scan after having headaches.  A large 31x27x22 mm growth was found in the cerebellum region of her brain.  Growth was very rapid as she had a MRI scan of her brain on March 20 and this was clear.

This melanoma was surgically removed on August 15 and Susan is having 10 sessions of whole brain radiotherapy.  My concern is that melanoma cells have now quite likely spread from the brain to other parts of her body.  Her oncologist says that she cannot go back on interferon and that there is no other treatment available.  I have asked about ipilimumab but he thinks that this is not appropriate.

I would appreciate comments on the best treatment options.  It seems sensible to attack this melanoma now before it gets a chance to establish itself again.  If this highly aggressive melanoma starts growing again Susan's life expectancy could be quite short.

Kind regards,


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KMT2003's picture
Replies 9
Last reply 8/28/2012 - 9:01pm
Replies by: KMT2003, Cate, Anonymous, King, Tina D, dellriol, LynnLuc

Well I have only been a member for a month or so but have been dealing with melanoma since 2007. Please read my profile to get my story. On Thursday I went to Moffitt to do the prescreening for the clinical trial I was supposed to start tomorrow. I did the MRI, CT scan, blood work and all that jazz. We then met with Dr. Kudchadkar to go over results that afternoon. She came in will bad news... I can't do that trial anymore because the found some new areas of concern in my bones. Pretty sure it is melanoma... What a shock for me and my husband. The tears started flowing and I am not sure I heard anymore that she was telling us. I was scheduled to do an MRI locally tomorrow but it got rescheduled due to insurance not approving it yet. On Wednesday we will travel back to Moffitt to have the bone biopsy now and they are in the process of testing me for BRAF. Once we get all the results we will start a treatment plan. There are still some trials to do. It is just so overwhelming and scary. I am young with a wonderful husband and two small children so I'm scared to death that I won't be around for them. I also forgot to mention that in area of the new areas I have been having a dull pain for the last two weeks but never thought it would be related....


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Jamietk's picture
Replies 5
Last reply 8/27/2012 - 2:38pm

Yesterday was my 7 year anniversary since my melanoma was removed. I assume I am NED. Not having any issues. Will see the Dr. at MDA on Nov 5th. Hope this gives some encouragement to others.

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MattF's picture
Replies 4
Last reply 8/27/2012 - 1:06pm

On 16 July I had my shave biopsy of a 1cm wide, thickness unknown but atleast 1mm Malignant Melanoma from my chin at base of my ear.

I am waiting to get in to have Wide Excision and SLNB.

My question is could the Melanoma have grown back in at the shave site? I could have sworn it was clean the day or so after the Dermatologist shaved it off, but now i see little brown parts in and around the area.

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Mickey n Jo's picture
Replies 6
Last reply 8/28/2012 - 2:01pm

Hi, my name is Jo and I am writing on behalf of my husband, Mickey. He was diagnosed as stage 4 melanoma in May 2012

and was put on Zelboraf within a week.  He's had all the usual side effects, nausea, hair loss, joint pain etc., but now

he is experiencing memory problems. He can't remember certain names or words and it's scary for him which creates

anxiety ( which he suffered from already). He had a brain MRI which came back OK, no mets. He also had a spinal

tap a week ago to rule out infection, but haven't gotten results yet. We were wondering if anyone else has had this

problem while on Zel.

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Snickers60's picture
Replies 8
Last reply 8/27/2012 - 7:23pm

We are 4 months downrange since Wayne started Zel.  He has just lost his eyelashes and most of his eyebrows.   He's very rlight anyway, but this has really given him the CHEMO LOOK !    He still has some hair, though looks a little like Kelsey Grammer or Jack Nickolson I tell him.   He looks like Jack a lot anyway but a lot better looking.  :-))  

He now looks SICK is what I am saying !    He is not a VAIN person, but has turned to caps for the weekend and I've found this fantastic oil for his skin, so it doesn't look or feel so THICK anymore.  

I understand that LIFE is the important thing - not vanity, but like everyone, this has it's challenges for work etc., and is hard reminder.

Did you all lose your eyebrows - eyelashes also ?    Too bad for men - no scarves - no wigs - no makeup.     I try pampering him a lot and giving him skin treatments etc. to help his overall grooming and feeling of self esteem and not LOOKING SICK. 

What's your experience ?

Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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kbrenner's picture
Replies 33
Last reply 9/17/2012 - 11:52pm

Hi all,

I was diagnosed with melanoma just under 2 weeks ago.  My dermatologist has had melanoma herself twice and assured me I'd be alright.  I had a mole removed from my scalp that was .3 centameters and she got me immediately in to see a plastic surgeon who they say is excellant.  Heard nothing but good things about him.  I know this is something I can not mess around with and need to get taken care of ASAP.  So I'm all set for surgery on Sept 10th.  They will be taking a skin graft from my leg for it.  Of course shaving the area on my head, I've always had very long hair so that's a change in itself, but the least of my concerns.  My concern now is am I making the correct choice, or should I be trying to go to the MD Anderson Center?  My Dr. mentioned the Moffit center in Tampa (I live the on the east coast of FL)  But she did not think it was necessary.  I've been reading some of the postings and it sounds like the MD Anderson Center is the place to go and I checked my Insurance and they are a prefered provider.  I do hate to delay, so I'm thinking I should go ahead with the surgery and if needed later follow up with MD Anderson, but I really don't know what to do.  My Derm. has been really supportive and since she's been through this before I feel good about what she tells me and try to stay positive.  However there are still  times I'm afraid it's going to end up being much worse and am worried I'm not going to be around to watch my beautiful little granddaughter grow up.


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Hi everyone, I've been reading all your posts since my boyfriend was diagnosed march 9, 2012, thought it was time to finally make an account.  I have learned so much here, and am very grateful that you take time out of your day to post your experiences.  Just wanted to say hi, and i hope everyone is feeling good today, and will do so for a long time!

Like i said my boyfriend is the patient. Diagnosed Stage 4, no primary on March 9th, 2012.  He just finished yervoy.  Nothing getting bigger, but not shrinking.  I filled out the profile (i know you all want the newcomers to get that filled out).  Also, he has all over body rash right now and itching like crazy.  He had a small rash just on his hips for a few weeks, but after his 4th infusion rash has gone crazy, as well at the itching.  Benadryl helps some though.  Any questions id be glad to answer. 


"Give thanks in all circumstances"

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Hi Kevin,


I have not been on the board for a few weeks and trying to catch up.

Have  you finished your WBR...any side effects?? I hope you are doing well.

You are such a strong young man. I pray you & Brenda have a life time of health that takes you on  wonderful adventures.

God Bless You.



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Tina D's picture
Replies 9
Last reply 8/30/2012 - 5:09pm
Replies by: Tina D, Bruce Davis, Jeff's Mom, Anonymous, awillett1991

I am in my 3rd month of Z. Had an incredible report of NED 2 weeks ago ( still thanking the Lord!) smiley. Have had full range of side effects since starting. Bad rash required almost 3 weeks off after 1st week of tx. Back on at 75% dose since then. Symptoms come and go ( though not as much on the going end of things, haha!). I have joint and muscle pain, sore soles of feet ( that has actually improved over past few days for the first time), photosensitivity, lost most of hair, extreme fatigue, nausea and vomiting, and painful red nodules. But last week, I spent about 8 days in a row down in bed or on the couch for the most part. I am NOT a person who likes to sit around, and this is very difficult to have to do ( Mom of 5, with 2 still scool-age and I homeschool). I had decided that come Monday, I'd call Dr if things hadnt changed. I had pretty good days Mon-Wed evening. Yesterday not so great, and last night temp of 101.2, and N/V, aches, ec. I currently have abt 20 of those painful red nodules.I try to avoid Ibuprofen, ec, for the sake of my liver. I also hate to be a baby abt any of it! I am so thankful to be where I am! But.... should I call the onco? I am his only pt on the drug. He is fanastic, but I do frequent this board to see what others are doing and how hey are making out. Has anyone else had problems with the side effects staying tolerable? If so, what did your Dr recommend? I think the pain and fatigue are my 2 biggest concerns here, and I am perfectly willing to coninue on just as is, if needed. But just wanted to see what everyone else has experienced, and see if there may be something that would help me out.I do take phenergan when the n/v get bad enough, but it puts me to sleep, so I try to avoid it as much as possible.

Thanks all. Any input is greatly appreciated,


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triciad's picture
Replies 8
Last reply 8/25/2012 - 12:45am
Replies by: Amanda, lhaley, Anonymous, Randy437, Laurie from maine, triciad

Hi Everyone,

I have a friend with brain mets.  Does anyone know which drugs cross the blood-brain barrier?

Thanks so much for your help and keep up the fight!


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MattF's picture
Replies 11
Last reply 8/26/2012 - 4:42pm

Ok diagnosed from pathology (shave biopsy) atleast 1mm right cheek.

Has not been excised.

Have appt with general oncologist tomorrow (24 Aug) after referral went from Derm through insurance.

I realized today that MD Anderson is only 3 hours away and is covered under my insurance (Active Duty Military Tricare) and my PCP agreed to put in a referral for MD Anderson Melanoma Skin Center. I called MDA and they said as long as they get a ref (insurance is verified) and medical record they can take new patients within 7 to 14 days.

Am I being nieve? is it that simple to get in there? Am I stupid for ever going down the general oncologist road?

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Snickers60's picture
Replies 26
Last reply 5/12/2013 - 9:41pm

This is the drug that Dr. Bedikian told Wayne they hoped would be available for Wayne in a few months !      Just found out and letting you know ! 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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rrrule32's picture
Replies 6
Last reply 8/23/2012 - 9:26pm

Has anybody here taken Zelboraf, stopped because of side effects, and restart the Zelboraf and have it not work?

My fiance is stopping Zelboraf for a small amount of time in order to let her nausea pass.  The Zelboraf has been working.  A part of me is worried that when she goes back on that it all of a sudden won't work.

Anyone have this issue?

Thank you,


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Gene_S's picture
Replies 11
Last reply 8/27/2012 - 1:50pm
Replies by: natasha, Anonymous, Gene_S, Charlie S

"Johnson & Johnson - makers of brands like Neutrogena, Aveeno, Clean & Clear, RoC and Lubriderm - announced that it will reformulate its products to remove dangerous chemicals like formaldehyde-releasers and triclosan. Johnson & Johnson is the first major personal care products manufacturer to take such an important action in favor of its customers' safety."

Possibly these chemicals may contribute to causing melanoma too?  see:

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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